Beneath the Surface of Normal

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You don’t need a PhD of Advocacy & Care to be an advocate. Just look inward.

You might even be using skills in your day to day life and not even recognized them as transferable talents. By identifying our strengths—and our challenges—we can recognize what we do best and where we need support. For example, personal strengths could be a diplomatic demeanor, natural leadership abilities, or a positive attitude. Personal challenges might be organizational skills, public speaking, or a compromised back.

Take inventory of your comfort zone, of all your abilities. Write down answers to the following questions (this is just for you – there is no judge and there will be no grade):

Who am I?

What am I good at?

What are my job skills?

What do I like to do?

What do I want to learn?

What do I avoid?

Why?

What do I want help with?

Who can help me?

Where do I find joy?

Page one of becoming an advocate is choosing the kind of advocate you want to be. You decide where you will be the most effective based on your innate and learned capacities. You dictate the action. You write the story. The next step is learning to tell it.

What is advocacy? Let’s spell it out: advocacy is not a four-letter word (although we may have been frustrated enough to use one). Advocacy and advocates are not something people need to fear. It is simply being for Something.

Advocacy does not mean you have to burn your bra…or your jock strap. You don’t have to heft poster board with a magic-marker-message above your head and chant, “Down with (insert antagonist of choice here)” among a sea of protesters, nor do you need to lie down in front of a bulldozer. True, this is advocacy. But this assertive form of activism is one that has often reached the desperation stage—and admittedly, there have been moments of desperation in my own caregiving days and nights where I considered extreme attention-getting methods.

So what are the different forms of advocacy?

Legislative – lobbying to legislators to influence public policy.

Legal – authorized to represent someone in a legal process.

Mass – large group efforts, such as petitions and demonstrations.

Social – create awareness or change on behalf of something or someone.

Self – speaking up for yourself, your particular demographic.

Think of advocacy like a story. Where starts and where it goes is up to you. You choose the characters and decide the setting. Don’t worry about the key element that drives the narrative—conflict. That’s a given or you probably wouldn’t be advocating for/about a Something. If you don’t know where to start, channel your inner Glinda: “It’s always best to start at the beginning.”

Advocacy begins with a passion. What do you feel strongly about? Who do you feel strongly about? What causes you to spend your time, your energy, your money on? What is the philosophy, situation, need, obstacle, frustration, or joy that gets your blood pumping, that massages your heart. What is your Something?

Call to action. This is when your “I am for…” can’t sit still, can’t be quiet. You feel the need to do something about your Something, to no longer be a bystander, to shed the sense of helplessness and become empowered through action.

Finding your voice’s comfort zone. Shy? You can voice show your support through passive methods: t-shirts, petitions, e-mails, letter writing, awareness bracelets, attendance at events. Outgoing? Any of the above of course, but add advisory committees, boards, meetings with policy makers, testifying, public speaking (stay tuned for a personal account in the Advocate Series: Speaking Of)

Fortunately, the wheel was invented some time ago. While no one has your unique perspective, skill set, or experience, there is a very good chance that there are other people who are advocating for a similar Something. Find them. Pool your energy. Share your stories. Connect with other advocates—there is strength in numbers.

Advocacy training resources:

Disabilities: The Advocacy Institute has an online webinar. Note that there is a charge, but you can view past presentations for free for “a limited time.”

Autism: Autism SPEAKS has a tool kit download for families and individuals. You will need to fill out a form to get the link.

Medical: Patient Advocacy Resources is a site with links, books, and guides that can point a patient or patient advocate in the right direction for becoming a better partner in health care.

We all have a Something, a story. We all have a circumstance that challenges our hearts, our health, our happiness. This is how cliches such as “In everyone’s life a little rain must fall,” and “God doesn’t put anything on your shoulders He (She) thinks you can’t handle,”—this is how these conventions, these pep talks, become cliches. They are universal beliefs and often doled out by the well intentioned ad nauseam.

There is an event, an illness, a challenge, a disability in each of our lives, or our loved one’s, that sweeps us away from our intended appointment with “normal” and into foreign landscapes. Often without warning, without training, without preparation our paths pivot, sending us careening into the unknown. Things that happen to other people have happened to us. Stares come our way. We become intimate with vulnerability.

Dizzy at first and with unstable footing, we can’t stand still. Restless. Helpless. Frustrated. But human nature, gut reaction, is survival.

Breathe in, Breath out.

Moment to moment. One day at a time, we chant in our hearts. We glance into the past at what if, but fact cannot be altered into fantasy no matter how strong the desire or denial. We face forward. The inescapable truth of the future hits between the ribs.

Breath in, Breath out.

Our shoulders hunch, flinch, upon the impact of sympathetic pats on the back, accompanied by universal beliefs voiced with aim to sooth and strengthen. The words give the spirit resolve, even company. We are not alone.

Breath in, Breath out.

The chin lifts. The sensation of passive victimization fades, and in its place active realization seeps in, an empowering resolve: the need to do something about our Something.

As caregivers you often do it all–personal care, medical management, bill paying–as well as transportation and domestic duties. In most cases there are three main differences between you, the family caregivers, and professional care coordinators. Professional care managers:

–Can’t do too much about the last two, but by using the care management tips and techniques utilized by paid supports, you can make your caregiving journey less stressful and more effective.

WHAT IS CARE COORDINATION?

Care coordination is the management of services and supports. Care Coordinators are the liaison between health care and insurance providers, support systems, and families. According The CommonWealth Fund, a nonprofit that promotes quality health care, care coordination is the organization of community and health services.

care coordination model

Family caregivers can adopt professional practices by breaking care coordination into manageable steps. After all, time (and sleep) is usually at a premium.

Katie does not have the luxury of a label. She has a “group of conditions” with “not otherwise specified” or “pervasive and profound developmental disorder” characteristics. Try putting a label on that. Even the labeling Powers That Be in government and advocacy are inconsistent in their official terminology. They are at different evolutionary levels: Mental Retardation; Developmental Disabilities (DD); Intellectual/Developmental Disabilities.

undiagnosed

Neither does Katie have distinct physical characteristics related to a label—children with Down Syndrome have recognizable facial features and look like they are part of one big family. And she is not included in a .org support community like Children with Autism, Down Syndrome, Fragile X, Prader –Willi Syndrome, or Angelman Syndrome. There is not a publicly recognized, organized movement with colored puzzle pieces, millions of followers on Facebook, and celebrity driven fundraisers or awareness walks for people who have an unspecified developmental disability.

The label that comes to mind most quickly for the general public is antiquated, inaccurate, and derogatory: retarded. One word labels are easier to digest. They are snapshots, blinks, for people who are not immersed in the culture.

When Katie was little I wanted to know what community she fit into. So we left our round (kitchen) table and went on the Quest for the Holy Label. After years of geneticists and lab tests and examinations we still had a group of conditions without a name. The only label we had was one they needed for education and insurance coding: profound developmental disabilities.

Now, I will tell you that not knowing a name for your child’s challenges, their Something, can create blissful ignorance. No one tells you your infant’s likelihood of a lifetime of limited capabilities: will always wear diapers; need someone to dress her, feed her, bath her; will never learn to read, or speak, say “goodnight” or “what’s for supper” or “can I borrow the car” (yeah, we can probably all live without that last one).

Katie is now an adult. In our Quest for the Holy Label we learned that she doesn’t need a label. Her challenges–moderate, profound, or unspecified—are simply part of being Katie, they are characteristics, like her curly dark hair and infectious smile